No other community knows the importance of resiliency like the Duchenne community, as highlighted by our communal commitment to ensure that all people living with Duchenne have access to safe, accessible therapies.

Clinical trials are one of the single most important sources of hope for our community, and we, in many ways, are fortunate to have such a robust pipeline with multiple companies pursuing various therapeutic targets. When we learn of a trial termination, it can be devastating for those participating in the trial, and the community collectively feels as if we have taken a step back in the effort to end Duchenne.

Although it is hard, every single trial, every single visit, and every single family that gives so much to help our entire community teaches us something by participating in clinical trials. In 2018 and 2019, we had a few tough blows with what felt like a sequence of trial terminations. One after the other, it is easy to lose hope. But, what we know, and what we plan to share with you is that the resiliency of this community inspires, motivates, and propels us all forward – even in the face of ‘failure’.

WATCH: Resiliency in Results – What We Learn When Trials Are Terminated

Last week, PPMD was pleased to be joined by partners at Pfizer Inc., Roche/Genentech, and Wave Life Sciences as they discussed what they have learned from terminated trials, the value of participation, and the influence the Duchenne community has had on their paths forward.

Webinar Recording:

Have You Participated in a Clinical Trial That Was Terminated?

Clinical trial terminations can be a devastating experience for any family participating in a trial. In an effort to learn more about the patient and family experience around clinical trials that have stopped or were terminated, PPMD and Duchenne UK have collaborated on a survey to learn more about your experiences.

While the community understands clinical trials are experiments and not therapies, the experience of learning about the outcome of a trial varies and can be very difficult for any family involved. It is important to learn about your experiences in the hope that the process may be improved for future trials. PPMD and Duchenne UK will be making recommendations to companies and study sites based on what we learn.

Complete the Survey >

Please note if you have participated in more than one trial that was terminated, you can take the survey a second time after you complete the first survey.